My Husband Has Bladder Cancer [sad update]

The Other Half spent more of December in the hospital than out of it. We finally found out why. In addition to a very nasty, drug-resistant urinary tract infection he has bladder cancer. Urothelial carcinoma, to be precise, and it’s gotten at least as far as the local lymph nodes (he’ll be getting a PET scan as soon as we can arrange it to determine just how bad this is). It’s an aggressive form of the cancer. He will definitely be getting chemotherapy.

To say we’re not happy is a vast understatement.

Not entirely sure what to expect, other than a shitload of paperwork. Spent an hour and a half on the phone yesterday trying to stay ahead of the game and resolve problems that have already come up. Fortunately, relatively minor. So far. I’d be spending just as much time on the phone today, except it being the weekend most offices are closed. I’m off again on Monday, so I’ll be working on that sort of thing again.

So, Dopers - what should I expect? What can I do to help him through/recover from chemo? He’ll be getting platinum based drugs, which I understand involve some considerable side effects.

He’s in a lot of pain right now - the scar tissue from multiple surgeries he’s had in the past seems to be inflamed in his lower abdomen in addition to whatever is normal (!?!) for this sort of cancer. Of course, if he would stick to the medication schedule that would help but he’s concerned about drug resistance and dependence. Well, I don’t think letting things get really bad before taking the next dose is helping, either. I have to convince him that alternating between “agony” and “high as a kite” is worse than maintaining a steady input of narcotics at this point.

I got him a cane and he’s using it, it’s been very helpful in keeping him steady and not falling. I’m going to be moving stuff out of the bedroom-to-bathroom hallway to make it easier to navigate and allow for possible future need for a walker or wheelchair - at best he’s unsteady on his feet, when he’s this debilitated it gets a lot worse. I’ve been using the laundromat drop-off service to do the wash because that gives me more time to work on all this other stuff. His appetite is nearly non-existent, so I got in a supply of Glucerna. Between those and what little he does eat he seems to have stopped losing weight right now, which, being down 25 pounds in a month, is probably a good thing.

Frankly, I don’t know what’s normal here, or how to help him much, and I’d value some input from either professional medical types and/or people who have been through this sort of thing. The level of pain is frightening and is what is making me most afraid this is even worse than we initially thought.

When he gets chemo, is the pain going to increase even further? If chemo is effective, does the pain go down a few days after treatment?

(Yes, I am certainly talking to the medical professionals but I reserve the right to talk to everyone else, too.)

I’m quite concerned about taking the time to care for him AND keeping my job. My work place has been pretty supportive already in regards to that and pushed the FMLA paperwork on me a couple days ago, so that’s in process. I’ve got another form to send to the insurance to allow me full authority to discuss his medical issues/billing/whatever. We’re talking about power of attorney and so forth, and while I’m not entirely sure where to go for that I expect finding out will be one of the more simple things I deal with in the near future. We are already discussing his preferences and possible end-of-life scenarios, including what he wants done with his stuff. It’s hard, but both of us would prefer to lay these things out on the table and get some resolution than keep them bottled up.

I don’t know how truly bad this is at this point. He’s past the “early, almost certainly curable” stage but I don’t know the odds of driving this into remission, or whether he’s already terminal, and I don’t entirely trust the doctors to tell me (or him) in explicit terms when it gets to the terminal point. And, of course, they probably don’t know for sure at this point, either, hence the need for a PET scan.

I dunno, maybe I just need reassurance.

Anything really detailed and medical coming from medical pros I’d sort of appreciate in PM’s, I guess this is really a thread for my psychological support as much as anything else. Yes, I’m marshaling my support network, because I anticipate this will get worse before it gets better.

Broomstick, I don’t have anything substantive to say except:

  1. I’m so sorry to hear this - will keep the two of you in my thoughts and prayers;

  2. Big internet hugs: {{{{{{{Broomstick}}}}}}

I don’t know any family law/estate planning attorneys in Indiana, but I bet someone in my office does. If you want a recommendation, just PM me and I’ll see what I can do.

I’m not sure what county you live in, but check out legal aid organizations near you - if you don’t qualify for pro bono assistance, they usually have a referral list of reputable attorneys.

Damn. Damn. Damn.

All the best to you and your better half, Broomstick.

I had some pretty hardcore le surgery many years ago, and was never a big fan of narcotics, either, but there is a time and a place for them, and this would be it. Besides, there’s a fair bit of literature that controlling pain actually helps the healing process. Maybe that will convince him to stick to the medication schedule?

I’m truly sorry.

It may be possible to adjust the doses so the options are less radical. Does the “high” phase actually involve not being in pain, or does it involve being so high he doesn’t care about the pain? If it’s the first then ask about dosage; if it’s the second, maybe they could also try other combos.

My mother spent half a year in the second situation - even secondhand, it was a barbed-wire bitch.

The people I’ve known on chemo (and that’s way too many for someone who isn’t in medicine) didn’t get worse pain with the chemo; common symptoms seem to include weakness, loss of apetite, loss of taste and nausea.

I am so sorry. I wish the two of you all the best.

Thanks for all the verbal support. It does help.

He’s never not in pain, even when he’s healthy, due to his birth defect.

Twice he’s skipped his long-acting PK because he didn’t feel he needed it and he also hates the foggy brain thing it can give him. Then his pain spikes out of control and he needs both the long-acting and the shorter “for breakthrough” one. Which means everything hits him at once which seems to be what results in kite-flying. About 1 to 2 hours later things level out.

I think he’s starting to figure out this strategy isn’t working.

I’m trying to prevent him skipping the long-acting - the first couple days he kept up with that he only needed the short-acting to get to sleep. Which means overall he may need less. Which means less constipation.

This is very complicated stuff.

Yeah, well, being down 25 pounds in a month he’s already feeling weak, and he doesn’t have much appetite. I did get some eggs and toast into him today. I’m also keeping a sub sandwich around because he’ll nibble on those.

I have nothing to add but (1) I’m sorry for you both, and (2){{{{{Broomstick}}}}}.

I’m so sorry. Hugs!

Shit, I’m so sorry Broomstick. And let me just say, because it can’t be said enough, FUCK cancer.

I’m really sorry to hear this, do you know beyond chemo what treatments he will be getting or prognosis? I feel for your husband being in pain just sucks, period.

{{{Hugs}}} to you both.

Keep him on his med schedule. You are right. It is much better if the pain is controlled than if he goes through the whole breakthrough/needs a lot thing. Now is not the time to worry about developing dependence. He needs his meds to function.

Make lists on paper or your phone (if you have a phone that lets you make lists) and pester your medical team/insurance team, etc. I’m disabled and have learned that often I am my best (and only) advocate. Ask questions, learn as much as you can, ask more questions, make suggestions, find other doctors and see them even if it’s only to get other opinions. The squeaky wheel does get more grease. Never stop pushing.

Also, find something for you. See if you can manage a movie once a week (or get a manicure or your hair done or go to the library or lunch with friends). Figure out a time for you on a regular basis and stick to it. You’re going to need to re-charge. The hospital also should be able to hook you up with a support group for caregivers. I would recommend that as well.

Good luck. Come back here and share what’s going on. We want to know.

Hugs to you both.

Very much likewise.


So sorry to hear it. Chin up. Chin up.

Game plan right now:

Get PET scan to find out more exactly what we’re dealing with. 2 chemo treatments. Another PET scan to see how effective the chemo is. 2 more chemo treatments. More tests to see where we are after that.

If the chemo isn’t as effective as we’d like there was an immune system therapy approved just last May which has proven effective in those situations. Not necessarily curative but effective at reducing the amount of cancer and giving a person more time.

A lot depends on the PET scans and how far this nastiness has spread. All plans subject to change with more/new information of course.

If it hasn’t spread too far and the chemo is effective the prognosis is relatively good - he goes into remission and stays there at least some years, maybe many years. If this has spread further/chemo is not effective it could enter into a terminal/hospice stage relatively quickly. The question is which situation are we in, and we don’t quite know that yet. Not knowing is very difficult.

I’ve got lists, file folders, people I use as resources (my sister is a doctor and I’m picking the brains of one of our docs here on the dope via PM, that sort of thing) and stuff like this thread, which as I said is mostly for morale support but maybe someone will come up with helpful ideas, too. I was pleasantly surprised when the health insurance person I spoke with clued me into a medical transport service that is covered by our policy and went over how I could speak for him if necessary if he was incapacitated before the required forms were in their office and on file for me to fill that role (right now we call them up and he gives verbal permission over the phone). She also started the application for declaring him medically frail and opening up more services to us over the phone for us. So, by and large, people have been quite helpful and encouraging.

Well, it doesn’t help my work schedule is all over the place… I’m trying to figure out what works for me. Going to the library might be that. Stuff like manicures and hair salons are just so very not me…

I’m sort of on the fence with that. I can see the utility of that, but my past experiences with support groups hasn’t been terribly positive, I always seem to be in a different head space than the rest of the group. But I’m willing to give it another try, especially since my main source of emotional support is the person who is sick right now.

Based on past medical crises, you probably won’t be able to get me to shut up. :wink:

I’ve always loved reading your posts, and although we’ve never met, I feel as if this calamity has just happened to a friend.

May you and your husband find strength in and for each other.

I am very sorry to hear this and I send my best wishes to both of you. Please get him on a regular schedule with the pain meds and keep on top of it, don’t wait until he’s in horrible pain. It’s best for him to stay a step ahead of it.

I am so sorry to hear of this! I wish you both better days and soon!

(My advice concerns looking after you, as you AND he go through this together. It will be a marathon, emotionally. One of the first things you should do is think up a respite provider. Someone you’d call if you HAD to step off for a day, (to handle something else, perhaps?) Find and begin grooming someone, ASAP. You MUST have such a person, in place, before a need arises! Next, do NOT wait till you are near breaking down to access this super hero. If you’re really going to be there for someone, that means going the distance, you will discover that this is what it takes! It’s gonna be very stressful, start managing it right NOW! )